Matthew S. Katz, MD

29 Oct 2013 10:17 AM

When I originally posted the idea of hashtags used to organize cancer information and communities online, it was more theoretical. Over the past three months, a lot has happened, which shows the potential advantages and limitations of using hashtags for health-related content.

Five concrete positive developments:

Evolution: Feedback has led to adaptation and simplification of the hashtags. The current updated list is published below. It will continue to evolve with your comments here.

Adoption: Both ASCO and MD Anderson Cancer Center have started using this proposed ontological system. The American Urological Association has started using the #pcsm hashtag a bit, and many individual urologists have been using it.

Community growth: There is a new tweet chat community for gynecologic cancer, #gyncsm, that has developed directly as a result of conversations online. Mike Thompson has also started a myeloma group, #mmsm. It’s been exciting to see advocates partner with patients and doctors. It suggests that there is value in the idea of organizing around hashtags for some diseases.

Tweet chat disclaimer: With #gyncsm we have developed a disclaimer that helps ensure that active discussants or more passive participants (often called lurkers), are aware of the pros and cons of being involved in a live tweet chat. Transparency, privacy, and participant well-being are all possible issues.

More visibility: Symplur, a consulting firm and leading aggregator of health hashtags, has recognized the increased activity in oncology chats on Twitter and has designed a cancer tag ontology page.

To see how activity differed for some of these hashtags, I have posted a summary for July-September 2013. Below is an example for lung cancer using #lcsm.

Selection bias: I love my online friends and collaborators, and I find Twitter a great way to learn and improve the quality of cancer care. But it’s clear that it’s a skewed group who choose to interact on Twitter. That indicates it’s not going to be a helpful medium for everyone. Other platforms may work better, and no guarantee that hashtags will have the same value.

Critical mass: It’s exciting to see lung cancer and gynecologic cancer groups start, but it’s less easy for some malignancies. Colon cancer should be common enough, but it doesn’t seem there are as many people sharing. Often lumped together is anal canal cancer. Both have different kinds of stigma, which may limit how much people share online.

Platform variability: While the hashtags seem to be a good fit for Twitter, they exist on other platforms as well. However, universal use of the same hashtags isn’t necessarily possible if it’s already in regular use on Facebook or Pinterest.

Both of these examples may contribute to the lower activity levels in #crcsm and #pcsm for colon and prostate cancer, respectively.

It’s also essential to keep in mind that social media, even used well, should complement rather than replace other ways to communicate. Telephone calls can often still beat a tweet.

What do you think would improve practical applications and use? Does something else work better than hashtags to organize cancer information online?